In anticipation of my next face-to-face appointment with my oncologist, the first in three months (as per usual) and considering a breathing issue I’ve been experiencing the last month or so, my wife, Dina (original Team Lourie member) asked if I wanted my brother, Richard (the other original Team Lourie member), to attend. Not that he wouldn’t attend if asked (he’s local); it’s more that I’m wondering if he really needs to attend, as in whether there will be life-changing, cancer-related decisions where all hands need be on deck. Of course, a week before the appointment I have no legitimate clue – nor have I received any suggestions from my oncologist – that anything of substance/recent changes that have occurred (I have also recently completed my quarterly diagnostic scans and am awaiting those results as well) will be discussed; and that’s the point of this column: how frequently, how/when does the patient/survivor know when team members should be present at these appointments?
Initially, at the very first meeting with your oncologist (see last week’s column: "Team Up"), team members’ presence, inclusion, participation, etc., is mandatory. It’s the subsequent appointments, however, when their presence may not be necessary; that is, the discussions with the oncologist are more mundane, (at least they have been for me anyway, mostly) and matter-of-fact and not as serious as they were at the beginning, when I was advised to take that trip I had always dreamed of because my prognosis was not that good: "13 months to two years." Now, I feel that if I bring along the entire team, I’m tempting fate somehow; thinking negatively when thinking positively is the anecdotal solution to what ails me. Trouble has already found me. I don’t need to look for it.
And by trouble, I mean: the current treatment is no longer maintaining the tumor’s status quo and there’s been some spread and/or growth or some additional kidney/liver damage, manifestation of which would likely stop treatment. Given that I’m presently taking the last drug my oncologist feels comfortable recommending I take (given the previous organ damage I’ve already experienced and knowing that most chemotherapy drugs are filtered through one or two of these organs), my next choices are: other chemotherapy drugs with a 10 percent chance of positively affecting the tumors (vs. doing nothing), a clinical trial at either N.I.H. or Johns Hopkins, or doing nothing and living my life – what there is of it, and trying in turn not to not focus or anticipate when the other shoe will drop off – figuratively speaking, and/or maybe even literally, too. And therein lies my dilemma: if this is in fact where I am, the need for a calm and reasoned perspective to help consider these alternatives would be most welcome and appreciated. Still, I can’t help being reminded of the old joke about the not-too-bright person questioning how the Thermos knows to keep the cold water cold and the hot water hot. How do I know my future fate? I don’t. I’d like to believe in karma, but sometimes, maybe most of the time, the die is cast.
If the substance of the conversation with my oncologist is to be serious, I want the team there. If it’s not, I don’t want them there as a presumptive buffer to bad news that I might not even receive. I don’t want to waste their support for an appointment that doesn’t really warrant it, if you know what I mean? But the problem is, I’ll never know until it’s too late, and too early is subject to reinterpretation, as I wrote about previously in a column titled: "Whew!" So now I’ll be waiting even longer for information/an assessment and knowing even less in the interim (because we’ve sort of learned our lesson) – and therefore we likely won’t know anything until the actual appointment.
Perhaps I’m writing around in circles here, but having cancer isn’t exactly a by-the-numbers kind of existence, and there’s certainly no handbook or racing-type form to direct you on the various facts/feelings to consider in your everyday living-with-cancer life. (I wish there were; gosh, that would make it so much easier.) Moreover, what seems like simple choices for those of you outside these battle lines become somewhat muddled to those of us on the inside. I’ll manage, though. I’m still alive five years and three months after receiving my diagnosis/prognosis in late February, 2009, a heck of a lot longer that I was originally given; and as I’m extremely fond of saying: "I’d be crazy to complain," and I’m not complaining, I’m just trying to sort out yet another cancer conundrum.